A man who was told he would not live to see his teenage years due to a devastating genetic disease is celebrating his tenth Christmas since a lifesaving lung transplant gave him a second chance at life.
A Childhood Shadowed by Illness
Joe Russell, 47, from Worthing, Sussex, was born with a severe form of cystic fibrosis. The condition, which causes progressive damage to the lungs and digestive system, meant his childhood was dominated by hospital visits and declining health. Doctors warned his family that he was unlikely to survive into his teens, as transplant technology was still developing.
Despite being academically gifted, Joe felt pursuing university was pointless as his health deteriorated. "My incredible medical team did everything they could for me but ultimately the disease destroyed my lungs," Joe recalls. "I was not expected to live to be a teenager."
The Gift of a Decade of Life
By his mid-thirties, Joe's situation was critical. Machines were keeping him alive, and he struggled to talk or stand, reliant on constant oxygen and intravenous antibiotics. "The difference is life and death. Without a transplant, I would not be here," he states.
Ten years ago, in December 2015, that lifeline arrived. A lung transplant saved him when he was at his lowest ebb. "Before my operation even the most basic of tasks was beyond me because I was so unwell," Joe said. He holds profound gratitude for his donor, a man he will never meet. "I owe my life to a man I will never know, I think about him single every day."
This gratitude is mixed with guilt and sadness for those still waiting. A record 8,000 people in the UK, including 250 children, face Christmas on the transplant waiting list. "Every life lost because of the lack of organs is a needless death and this is a tragedy," Joe emphasises.
Folding Hope: The Campaign for Conversation
Joe is now fronting a poignant video campaign for NHS Blood and Transplant called 'Hope Takes Flight', which uses the motif of a paper aeroplane inspired by his work as an origami artist. The campaign features his story alongside other transplant recipients and a child donor story.
"Medicine has cared for my body, but origami has cared for my mind," Joe explains, describing how the art form offered him a world of creation during long periods of illness. The paper plane in the video symbolises the tangible passing of life from one person to another.
He is joined by Christine Cox, 63, whose family's campaigning, in memory of her brother Peter, led to the creation of the first national NHS Organ Donor Register in 1994. Christine, who met Joe at an event in Wolverhampton, said: "Hope takes flight is a brilliant project showing how people can be connected through the altruistic gift of life."
The Vital Importance of Making Your Wishes Known
Although England, Wales, Scotland, and Northern Ireland now have an 'opt-out' organ donation system (deemed consent), where adults are presumed to be donors unless they state otherwise, families retain a right of veto. This makes discussing your decision crucial.
"Without knowing a loved one’s wishes, many families understandably decline to consent," Joe notes. "Confirming your decision on the register and telling your family will allow them to honour your wishes." He credits his own donor's family for having that conversation, which directly led to his survival.
Both Joe and Christine urge families to use the Christmas gathering as an opportunity to discuss organ donation. To register your decision, you can call 0300 123 23 23, visit www.organdonation.nhs.uk, or use the NHS app in England.
